From Reading Researcher To Parent Advocate

So, I was a language researcher and a psycholinguist and a reading researcher, probably 12 years before I had a daughter who turned out to have dyslexia, DLD, ADHD, and autism. And that’s a handful. And all of those diagnoses didn’t come about all at once. But it was very challenging for me as somebody who was supposed to know it all to be able to get my daughter the support and the assistance that she needed.

I remember vividly having to pretty much bully a child study team member. This was the district, their child find team, that is supposed to be giving the assessments to find kids who have disabilities. I had to pretty much bully this person into giving my daughter a phonological assessment because they just weren’t going to do it. And I knew that she had phonological issues. I could just see it from knowing her and knowing what I know. So, it was an uphill battle the whole time.

One of the things that I learned very quickly, though, is that I have to not be part of her reading story. In other words, when I tried to help her to read at the beginning, most of the time both she and I ended up either in tears or fighting. It was an absolute battle because, you know, I would say things like, “Don’t you realize how important this is?” And she was like what, 4, 5? Of course, she didn’t realize it. For me, it was the end of the world if she didn’t read. And for her, it was just sheer torture.

So, I had to very quickly get myself out of that position. In the end, I sort of tried to manage things and control things from the background, making sure that she had Orton-Gillingham-trained instructors and tutors and always pushing for her school to give her the support she needed.

Initially, we thought it was dyslexia because I also didn’t really understand about DLD. And then as she got older and as I saw how much she struggled with just basic language expression, we understood that she also has DLD. So, I’m constantly thinking about parents who don’t have the background, the language background, the scientific knowledge, and just the ability to identify what’s going on with my kids. So many parents don’t have that. And so, I’m constantly really just wondering how in the world can we fix this system because it was hard for me.

So, my daughter’s 19 now and she reads at about a fifth-grade level, maybe that’s generous, maybe it’s fourth and fifth grade, but she does read. And she will sit on the couch on certain times, when the whole family has our reading time so everybody’s reading and she sits and she reads also. So, I’m grateful for that and yeah it’s not easy being a parent with these kids because each one of them is different and you know there’s very special challenges to maintaining your mommy identity and not being the one who’s constantly you know being concerned that she’s not making progress the way she should.

So yeah, there’s basic holes still, you know, she’s got a lot of different things. The autism aspect of her, you know, I don’t know what, her personality makes it very difficult for her to be a learner. You know, she actually believes that she knows how to read perfectly well. Like she doesn’t need any tutoring. She’s done with school. She’s, you know, at this point I don’t think she’ll probably get much further, even though I’m sure she could. But she doesn’t see herself as someone who has a disability. 

I guess I’ll say, at the very beginning, I think that I was so convinced that I knew how to fix this. The fact that I couldn’t fix it in her was very demoralizing because how many times have I stood up there and said 95% of kids can read, right? But I couldn’t fix it with my daughter. And you know, thank God she’s gotten as far as she did. But at the very beginning, I think that I didn’t realize how much the other aspects of her personality really controlled the outcome.